anyone taking "lamotrigine" aka lamictal?

[SarahD]

Lamictal

Sorry, I know this message is a bit late, but I just joined this site. I have been on 600mgs a day of lamictal since October of 2007. I have had very little in the way of side effects and, in fact, the medication was apparently working so well, that I began to think I probably didn't need it. At a routine check-up with my neurologist 16 days ago, I asked if we could try to wean me off the med. She agreed, but said it would have to be a really slow decrease. She dropped me down to 500mgs daily. 11 days later (this past Thursday) I had a seizure in my sleep, predicated by an overwhelming phantom olfactory hallucination (I have been anosmic since surgery to remove a olfactory groove meningioma in July of 2007). I immediately increased my dosage back to 600mgs. I have had some minor after-effects since then. Friday was basically a lost day; confusion, light-headedness, sleep, disorientation, headache. Saturday was better. However, today is my first day back to work, and I am having a very difficult time concentrating. Also, my typing and spelling are pretty good (spelling is better than typing), but I am finding myself having to stop in the middle of a word to remind myself how to spell it.

I am now trying to come to terms with the fact that I do have a pretty serious seizure disorder, and frankly speaking, I'm sad. I was hoping this wouldn't be a permanent medical condition, but 5 years out, I think I have to admit to myself that it is. Still, I have to remind myself how lucky I am to have survived a brain tumor with no major, life-altering deficits.
Best of luck to all out there. Glad to be part of this community.
SarahD

 

[Nakamova]

At a routine check-up with my neurologist 16 days ago, I asked if we could try to wean me off the med. She agreed, but said it would have to be a really slow decrease. She dropped me down to 500mgs daily.

I think your neurologist erred in having you taper so quickly. Certainly, it's always safer to taper as slowly as possible. When I've tapered on Lamictal, I've done so in an increment of 25mg (and sometimes even 12mg -- cutting a 25mg in half!), and stayed at each dosage level at least two weeks. At my pace, it would have taken at least a month to get to 500mgs -- not eleven days!

 

[SarahD]

Wow - so much to learn!

Nakamova,
Thank you so much for your input and also for your reply to my introductory post. I am so surprised to hear you say that decreasing my dosage by 100mgs was too much, too fast! I was actually kind of disappointed, thinking that it was TOO modest a decrease. Like I alluded to in my first post, I think I was in denial that I really even had a seizure disorder. I suppose I should have known, since it took a long time after starting the medication to get to a point where it was at the "therapeutic level" (is that the right term?) in my blood, that dropping down by 100mgs might be a bad idea. I think that the main issue was that I was under the impression that I hadn't had a single seizure since the one that predicated the discovery of my tumor 5 years ago. After that visit to the neurologist, my bf "reminded" me that I had had a seizure in my sleep a few months prior. He woke up to me convulsing, which he said lasted for 20 or 30 second. I have ZERO recollection of him telling me, and I probably wouldn't have pushed for the decrease in dosage if I had known. I asked him what my reaction was when he told me, and he said it was something like "Oh, that's interesting." There's no way I would have reacted that way. I would have been on the phone with my neurologist that day; would have been freaking out, and would have grilled him for details. None of which I did. I'm not saying he didn't tell me, but I'm wondering if he told me so soon after the seizure that I lost the memory of the conversation altogether. Is that possible?

Now I can't help but wonder if I've had more seizures in my sleep and just not realized it. Is it common for some people to only have seizures in their sleep? But I'm also trying to look back and think, "have there been times when I have been out of it for no reason, or noticed any otherwise strange behavior?" I just don't know. Like I said in my other post, I'm really sad about this. I wanted this to be something I would get over; better yet, something I didn't really have in the first place. When people ask me if I have any lasting effects from my brain surgery, I have always said. "only the loss of my sense of smell." Now I know it's more than that. That's a tough realization to reach after 5 years.

Anyway, thanks again for your comments; I think that I'm really going to enjoy being part of this community. Most importantly, I think it will help me feel less alone.
SarahD

 

[Nakamova]

I'm wondering if he told me so soon after the seizure that I lost the memory of the conversation altogether. Is that possible?

Very likely. I've been told about conversations I've had after a seizure -- I appear completely normal to the other person, but I'm not actually completely "aware" yet, and as a result I have no memory of the conversation.

Is it common for some people to only have seizures in their sleep?

Yes. Many folks have nocturnal seizures that they only know about because of a partner's observation, or from sleep studies, or from deductive reasoning based on how they feel in the a.m. You can read about nocturnal seizure here:
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-11904/
http://www.coping-with-epilepsy.com/forums/f20/strange-nocturnal-seizures-17710/
http://www.coping-with-epilepsy.com...nation-seizures-only-happen-your-sleep-11744/
http://www.coping-with-epilepsy.com/forums/f20/nightime-seizures-13552/
http://www.coping-with-epilepsy.com/forums/f23/seizures-your-sleep-12713/

Some of the subtler kinds of seizures that don't involve full loss of consciousness can be easy to ignore or discount. On the other hand, some people only have tonic-clonic seizures without warning. So it can be tough to get a handle on whether or not there's ongoing seizure activity. Sometimes it can just be unusual stressors that push someone "over the seizure threshold" -- for example missing a dose, or suffering from an infection. So there's the possibility that your recent seizure is a fluke, and that you'll be able to have seizure control by staying on the higher dose of Lamictal. And there's also the possibility that you might be able to try tapering down again in the future -- just at a much slower rate to be safe. There's no way to know for sure, but the faster taper might have precipitated your seizure, sort of like ripping off a bandaid too fast and thereby re-opening the wound beneath.

I know how distressing it can be to realize that the seizures may be here to stay. I recently was going through some folders of information that I collected after I had my initial seizures (approx. 13 years ago). I compiled research on rates of one-off seizures, seizure remission, medication raper, etc. I really didn't want epilepsy to be part of my life (who would?). But I've mellowed in my attitude, and I've been fortunate enough to get seizure control on a relatively low dose of Lamictal. I still hope to go off meds eventually, and I'm interested in alternative/complementary treatments such as diet and neurofeedback.

I hope you reach a comfort level with having a "seizure disorder" (easier to tell others about than "epilepsy"). It's not the end of the world, and hopefully it will just be a minor part of yours.